When you’ve got Ehlers Danlos Syndrome everything is affected, to some degree or another. As I’ve said before, no-one presents with exactly the same symptoms and when you’ve got a bit of an EDS genetic mash up like we seem to have, those symptoms become even less ‘text book’ than a patient who has a classical form of EDS.
The Sealion Keeper, the Cheetah Keeper and I all have problems with our feet to some extent. I realise now (about 25 years too late) is all the pain I had in my feet when I was a child when I jumped off or down from things was actually my feet partially dislocating. I can’t explain quite how much this hurts – although it hurts less than the stress fractures that I have been plagued with throughout my adult life. Buying shoes for Ehlers Danlos Syndrome ridden feet is a major challenge, for all of us.
I’m now very limited with the shoes I wear. Heels are a thing of the past – having broken a foot wearing boots with a mahoosive 1.5″ heel out shopping. I prefer the ‘fitness’ style shoes with the curved base. They do wonders for keeping my pelvis in alignment – as long as I have my insoles in place. I have custom made carbon-fibre insoles – expensive but they last for ages and it’s far better than having time off work with broken feet. I still get pain and my feet get really tired but it’s not as bad as it was. My feet still sublux but that’s how EDS rocks.
The Cheetah Keeper’s feet don’t point in a ‘normal’ direction and as such he found walking very hard and runs with a kind of lollop (I don’t know how else to describe it). Remember, the original Cheetahs in the shoes were his way of telling us his feet hurt. He has a set of insoles now that he wears for everything and wears trainers for PE rather than plimsolls (which do nothing to support feet, just protect them a little from the outside world). His feet are hypermobile, flat and often give him pain – either that or the Cheetahs have been breeding and there are some babies that have to be taken out the shoes again!
His sister has insoles too – her feet are hypermobile and as such very flat. They’re also massive for her age – at 8 she is wearing a size 4.5 or 5 shoe! (although she is 5′ tall – that’s 150cm in new money). After her bout of Scarlet Fever in Reception, she wore lace up boots to school for over a year – her ankles were too weak to manage in ‘normal’ shoes. With wide feet, insoles, wobbly ankles and the lack of fine motor skills to do up laces, school shoes have been a nightmare. Out of choice she’d live in Crocs or wellies (that covers being at the beach and being at the zoo) but in reality, shoes are required for school.
This year, the lovely people at Hotter Shoes have sent her a pair of school shoes and for that we’re very grateful. I’ve seen plenty on EDS forums about Hotter Shoes being great with their excellent shape, padding and support. They also have removable footbeds for those who wear orthotics. They sent her these Melissa shoes from their new range:
She loves them. They’re comfy but ‘cool’ (when you’re 8, have size 5 feet and orthotics the choice of shoes is limited) and they’re standing up well to school life. The touch fastening serves well as she doesn’t have to struggle with laces or buckles – both of which she finds hideously hard. From the state of them, she’s been out in the playground too, and on the field at lunchtime. They’re dusty but wipe clean beautifully – they are obviously getting a really hard life compared to someone who might be wearing them to work.
Hotter Shoes are not cheap (the Melissa are £70 per pair) however, with EDS affecting my feet the way it does, I am one for finding a pair of shoes that fit and that don’t cause my feet to fracture and paying whatever it takes. Broken feet make it impossible to work and mightily difficult to look after my family. When the children have tired and sore feet it stops them enjoying life and makes everything even harder than it should be.
As much as EDS affects every patient in a different way, I’d recommend giving Hotter Shoes a try if you haven’t already. Yes, they’re a substantial investment but their mail order service is great and they are delighted to help in store if you’re able to visit. It’s unfortunately still a rarity to be able to speak to a shoe shop about orthotics and get a knowledgeable and helpful response – standard reply is a blank look, especially with shoes for children. Hotter Shoes have been brilliant with shoes for me and these for the Sealion Keeper – and in that this makes life a little less stressful when there’s more than enough going on for both of us, that’s great.
If you’ve got any other footwear recommendations for EDS feet, please do let me know!
Disclosure – if you haven’t realised already, Hotter Shoes have sent us shoes for the Sealion Keeper for school. I thank them deeply. I am by no means obliged to write about these shoes in relation to EDS, but having seen so much in forums, I thought I would add the information we’ve gained to the post and perhaps help others with EDS find something that will help their foot pain.